Community Discussion Forum Parent support My son has PKU, how do I deal with this? Reply To: My son has PKU, how do I deal with this?

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Congratulations on your bundle of joy!  Let the good times roll!

We have a beautiful almost three year old son with classical PKU.  What a blessing he is to us!  I can't stress enough to you that our son is so normal and  SO IS YOUR CHILD.  SO ARE YOU AND YOUR HUSBAND

The first year is the hardest.  I am here for you to answer any questions you may have (if I can), to listen, and to assure you that all is well with your child!

We consider PKU an inconvenience at times, but certainly something that is completely manageable.  It is so overwhelming at first.  Too much information comes along, so I won't bog you down with specifics. 

However, I did put together a list of things you should concern yourself with for future reference (which has nothing to do with PKU):

1)  Your child will probably want to be held all the time.  Also, the crying gets louder.  You will feel like you are so exhaused that you might die.  You won't.  Nap when your baby naps.  Cry when your baby cries if you need to, and the first time you put your child in his bed when he is crying and close the door because you can't stand the noise, know that we have all done it.  Then, when he is asleep, spend time gazing at his perfectness and know that God created sleep so that kids are able to stay living.

2)  Buy extra supplies, get a HUGE bag, and chuck it full of everything you need in the house.  Then keep it by the door. You will never get to leave the house without a ton of stuff.  I'm still packing the house.  Then, when you get your son in the carseat, get all the junk in the car, and accidentally lock yourself out of the car, know when you are calling the locksmith and waiting for help while pressing your face to the glass and thinking how could I do this? that we have all been there.

I hope you got a chuckle.  Don't let PKU spoil this time.  There are many things all parents have to worry about.  Time helps with it all.


Lori Kiely

Nathan's Mommy

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